I’m just sad today.
Sam’s sick today, was throwing up last night, and is still asleep in the living room. He was throwing up a few weeks ago too, and even though Marc is convinced it’s just a random run of the mill virus, nothing to worry about, a part of me is convinced that we’re right back where we were before the accident, when he had all those awful stomach problems and we couldn’t figure out why.
Jessie’s still processing having celiac’s disease, and I am still trying to adjust to the reality that my child has a chronic auto-immune disorder that’s going to impact her life in such a huge and permanent way forever.
We had Julianna tested, and while her celiac panel came back negative, her genetic typing showed that she has at least one of the genes that’s predispose her to developing celiac’s at some point. Given that she’s much more prone to an upset stomach than the other kids (whereas Sam is much more prone to diarrhea/vomiting), I’m at least halfway convinced she has celiac’s too – and the blood test is simply a false negative. Based on my extensive medical degree… I’m just guessing with all of this, and the not knowing is so hard.
We’ve got an appointment with Jessie’s GI doctor on Friday for Julianna, and hopefully I’ll get some clarity or at least some guidance on where to go next. Jessie and Julie had the same allergy results, slightly higher than normal for egg white, wheat and dairy – but the allergist said that they weren’t statistically significant enough to worry about. And then Jessie got the celiac diagnosis, which meant that I was perfectly content to not worry about the allergies. But with Julie – I don’t know if I should be avoiding egg white, wheat and dairy, or if I should ignore that too. I don’t want to put her on a gluten free diet if I don’t have to – but if it would help her… I just need to know.
I’m just sad. I don’t want my kids sick. I don’t want to have Jessie afraid to go out for lunch with her friends, or for Julie to not be able to order her chicken nuggets/french fries/chocolate milk combo that’s been her standard order at every restaurant we’ve ever been to. I don’t want to have to subject Sam to more gastro appointments and bloodwork and testing – but I can’t help but wonder if he’s developed celiac’s as well. I keep reviewing what he ate yesterday – was there gluten somewhere in there?
I sent Julie with a tortilla to school today. I feel guilty. Even knowing that if she does have celiac’s, she needs to be eating gluten before the endoscopy. If they do an endoscopy. Should I be pushing for an invasive medical test to confirm or rule out celiac’s? Or is the bloodwork sufficient? Does having a first degree relative test positive, abdominal distress, and positive genetic testing mean that I should just go gluten free and see if it works?
I just keep going around in a circle. And nobody really gets it – because going gluten free is so popular these days – it’s such a trendy thing to do. It’s no big deal, so your kid can’t process gluten. But it’s very different to avoid gluten by choice as opposed to being told that gluten is comparable to rat poison for your child, and has to be avoided at all costs. And there’s virtually no guarantee that you aren’t going to inadvertently be a victim of cross contamination. Jessie’s celiac is so serious and real and terrifying, and not knowing if Julie has it, or if Sam has it (despite having all of these symptoms back in 2015 and testing negative both with blood work and colonoscopy/endoscopy combo). I hear I’m being fatalistic or too negative – but the consequences for untreated and undiagnosed celiacs are so scary – how could I not do everything I can to figure out if my kids have this? How do I not worry and plan and stalk the nurses and doctors to get the right tests ordered, and said results explained to me?
It’s a sad day for me today. Or I should take my own advice – I always tell the kids they can change the phasing to make it better – it’s been a sad morning for me. I’m sleep deprived (because of course the vomiting for Sam would be in the middle of the night) and scared, and those are not a good combination. It’s been a sad morning for me. It’ll get better.